Caregiver Guides

Welcome

Traumatic Brain Injury: A Guide for Caregivers of Service Members and Veterans (1,172kb)

Module 1

Introduction to Traumatic Brain Injury (TBI)(1,755kb)

Module 2

Understanding the Effects of Traumatic Brain Injury and What You Can Do To Help. (1,481kb)

Module 3

Becoming a Family Caregiver for a Service Member/Veteran with TBI. (1,764kb)

Module 4

Navigating Services and Benefits. (2,009kb)

Caregivers Companion

A Guide for Caregivers of Service Members and Veterans has information and forms that can help you in your care giving journey. (3,988kb)

Complete Set

Download the complete set of the above PDF's zipped. (8,800kb)

Frequently Asked Questions

What are Common Physical Effects of TBI?

  • Headaches
  • Sleep Changes
  • Fatigue/Loss of Stamina
  • Dizziness
  • Balance Problems (Tendency to Fall)
  • Sensory Changes
More information - Managing Physical Effects of TBI

What Physical Effects May Be Less Common?

  • Spasticity
  • Hemiparesis, Hemiplegia
  • Bladder/Bowel Changes
  • Changes in Swallowing and Appetite; Weight Loss or Gain
  • Visual Spatial Problems
  • Apraxia
  • Seizures
  • Heterotrophic Ossification
More information – Managing Physical Effects of TBI

What are Common Cognitive Effects?

  • Confusion
  • Slowed Speed of Processing
  • Attention Problems
  • Difficulties with Memory
  • Planning and Organization Problems
  • Difficulty with Decision Making and Problem Solving
  • Confabulation
More information – Managing Cognitive Effects of TBI

What are Common Communication Effects?

  • Does Not Speak Clearly
  • Problems Starting a Conversation
  • Word Finding Problems
  • Reading Comprehension
More information – Managing Cognitive Effects of TBI

What Communication Effects Are Less Common?

  • Dysarthria
  • Interrupting or Having a Hard Time Taking Turns in Conversation
  • Topic Selection
  • Writing
  • Non-Verbal Communication Issues

More information – Managing Cognitive Effects of TBI


What Are Common Behavioral Effects?

  • Frustration, Increased Anger/Aggressiveness
  • Impulsivity or Difficulties in Self-Control
  • Poor Judgment
  • Reduced or Lack of Initiation
  • Repetitive Behaviors (Perseveration)
  • Less Effective Social Skills
  • Changes in Sexual Behaviors
  • Lack of Self-Awareness
More information – Managing Cognitive Effects of TBI

What Are Common Emotional Effects?

  • Depression
  • Increased Anxiety
  • Mood Swings (Emotional Lability)
  • Changes in Self-Esteem
More information – Managing Cognitive Effects of TBI

Will our lives ever get back to normal?

The course of recovery after TBI depends on several factors. Your lives may return to “normal” or you may need to learn to adjust to a “new normal.” It can take time to adapt to the life changes after TBI. Although many problems will improve in time, some symptoms may persist throughout the person’s lifetime. Research has shown that many people who experience TBI do lead a life they find satisfying, even if it is not exactly the life they had prior to the injury.


How Should I Organize Medical and Military Records?

A notebook that includes sections for:
  • Personal information – This includes important facts, such as your service member/veteran’s Social Security number, military service record, emergency contacts, and allergic reaction to medications.
  • Military service papers – Keep copies of military service records, etc.
  • Medication log – Write down all the drugs taken, dosages, dates, side effects, and problems.
  • Medical reports, tests, scans – Ask for copies of all reports, scans, and tests, and file them in this section of the notebook. Put CT and MRI scans of the brain on a CD. Keep these to share with future providers.
  • Notes and questions – Include a three-hole punched notepad in your notebook. You can use it to take notes and then insert the sheets in the right sections.
  • Resources and information – This is the place to keep all the forms and information you have received at appointments.
  • Calendar of appointments – Use a calendar with enough room to write all of your appointments.

You may want to keep another notebook or file with the records needed to apply for medical and family benefits or Medical Evaluation Board/Physical Evaluation Board (MEB/PEB). (See Module 4 for more information about the MEB/PEB.) This file will help when you apply for financial aid, a job, or more medical care. When you are not using this file, keep it in a locked place to keep it safe.

This file could include:

  • Social Security card, military records, and insurance cards
  • Power of Attorney
  • driver’s license, birth certificate, marriage certificate
  • school and work records
  • tax returns and assets.


How Can I Tell My Child about TBI?

Communicate in an age-appropriate way what has happened to your family member with TBI. Protecting your children by withholding information may backfire. Children have active imaginations that may create a scenario worse than reality.
More information - Helping Your Children Cope


What Can I Do If Caregiving is Just Too Much?
Have a back-up plan for finding temporary or more permanent residential care for your family member with TBI. Discuss quality of life issues with your family and health care professionals. Your choices may include:
Give others permission to care for your loved one. Seek assisted living facilities and board and care homes—for those who have difficulty living alone but do not need daily nursing care. Consider nursing homes, also called skilled nursing facilities—for individuals who need 24-hour nursing care and help with daily activities. Skilled nursing care can also be provided at home by nurses you hire. Check with your case manager(s), VA liaison, and/or military liaison for residential care benefits that may be available to your family member with TBI.


What Can I Expect When My Family Member Comes Home?
Moving back home is an exciting step in the recovery process! Although the transition to home is certainly positive, it is important to be aware that it may also be stressful at times. Some families report that during the first few days or weeks at home, their family member regress and need more time to adapt to a new environment, even if it’s a familiar one. It is helpful to add structure and consistency right away at home by scheduling activities and rest breaks much like the schedule observed in rehabilitation. Recreational and occupational therapists are your best allies in this effort and they will work closely with you to practice community re-entry.
More information - Preparing for the Transition Home & Transitioning Home


What is the Family and Medical Leave Act?

The Family and Medical Leave Act (FMLA) provides service members/ veterans and their spouses who are employed by companies with 50 or more employees with up to 26 weeks of unpaid leave per year to care for a seriously-injured service member without losing their jobs or health care insurance.
For the most current information: www.dol.gov.
For More Information – LINK to Scene 14 - FMLA


What Temporary Housing is Available for Caregivers?
If your service member/veteran is being treated at a military treatment facility (MTF) or a VA Polytrauma Center, you may be able to stay nearby for free or at a low cost.
Housing for family members includes:

  • Malone House at Walter Reed
  • Navy Lodges
  • Fisher Houses at the VA Polytrauma Centers.
Nonprofit organizations may also make some apartments near treatment centers available to families at little or no cost. Check with your POC to find out what temporary housing is available where your family member is being treated.
More information - Addressing Everyday Issues


 

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Related Information:
Glossary
Frequently Asked Questions
"In the very beginning, I didn’t want to know anything because I was so scared. But a little while later… the doctors would throw out tidbits to me, like he might never speak again and he might never walk again… but I couldn’t understand why. So then I wanted to understand the part of the brain that was injured and why he was having these symptoms or why he was having this diagnosis." -  Patty H.